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Policy and advocacy work is increasingly important at the state level. In an effort to keep you informed about the work happening on the ground at the local level, HFA is debuting a quarterly update, “State of the States.” Stay up-to-date and read about the work happening close to you! The COVID emergency has upended […]

April 30, 2020

Click Below to Translate Page to Spanish. STATEMENTS AND UPDATES During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFA聽will continue to publish updates and information about COVID-19 and its effects on the bleeding disorders community. MEDICAL NEWS INDUSTRY NEWS & PRODUCT AVAILABILITY NATIONAL, GOVERNMENT AND LOCAL NEWS RESOURCES FAQ: BLEEDING DISORDERS AND COVID-19 […]

January 21, 2019

  Dear Addy I鈥檝e heard the term 鈥渟urprise billing鈥 in the news recently and I鈥檓 concerned about how it could affect my family, especially if we have to go to the emergency room for a bleed and a provider is out-of-network. Can you share more on this issue and what we can do if it […]

Disclaimer: At HFA, we value all opinions. This blog only reflects the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 a.m. on April 20, 1999, in Littleton, Colorado, […]

Copyright All information and content in HFA鈥檚 publications and communications are protected by HFA鈥檚聽copyright. All rights are reserved. However, we encourage our membership to take advantage of their partnership with HFA and utilize our brand when appropriate. We do ask that you follow our guidelines in their use. When using HFA materials, include our copyright […]

Thank you for your interest in Hemophilia Federation of America. We look forward to connecting with you and provide the following information below as helpful basic information on HFA and the bleeding disorders community. Press / Media Contacts: Please use our contact form聽or email news@hemophiliafed.org for all press inquiries. Reach our Primary Office at: 999 […]

Copyright All information and content in HFA’s publications and communications are protected by HFA’s聽copyright (LINK). All rights are reserved. However, we encourage our membership to take advantage of their partnership with HFA and utilize our brand when appropriate! We do ask that you follow our guidelines in their use. Reprints To request permission to reprint […]

  With the HFA Community Research Portal, HFA are developing and curating patient-centered research surveys for everyone in the bleeding disorders community. Open and Active Surveys: Tell Us About You CHOICE 2.0 Recently Concluded Surveys: Gene Therapy & You HFA PRIDE Project Several additional surveys are being developed and will be launched in the upcoming […]

Below are lists of posters and publications HFA Research have participated or presented in. The lists are routinely updated as new posters or publications presented. CHOICE Posters and Publications: Please email HFA Research (research@hemophiliafed.org) to obtain copies of the CHOICE posters. 2016: Poster: Khachatryan A, Bron M, Cyhaniuk A, Owens W. 鈥淐haracteristics and Treatment Patterns […]

Whether you have a bleeding disorder yourself or you are a caregiver to someone with a bleeding disorder, it is often a juggling act to live with a chronic condition and maintain your livelihood. This toolkit is comprised of resources from a variety of sources related to employment issues including information about the Family Medical […]

To recognize June as National Safety Month, HFA has compiled this list of resources to protect and prevent accidents that can happen whether you have a bleeding disorder or not. 聽This toolkit has resources that are specific to living with a bleeding disorder and others that are more general. 聽View these tools as ways to […]

The road to independence and adulthood often travels through a college town.聽 In this toolkit, you鈥檒l find resources about preparing and making the transition from high school to campus life.聽 聽This toolkit has resources that are specific to living with a bleeding disorder and others that are more general, but are applicable if you or […]

Our Project Experts and Presenters Bonnie J. Brehm, PhD, RD, LD is a Licensed, Registered Dietitian and Professor in the College of Nursing at the University of Cincinnati.聽 She also serves as the Nutrition Coordinator in UC鈥檚 College of Medicine. Prior to her academic career, Dr. Brehm worked as a clinical dietitian in hospital and […]

HFA Programming: Blood Sisterhood is a network of women who support women with bleeding disorders in their day to day life. A way to connect with others who share a similar journey united by blood. Wherever you may be on your journey, whenever you are ready, we are here to connect you to the resources […]

The following terms and conditions are in place to ensure a civil and respectful discussion that add to the richness of the HFA website, publications and communications dialogue. This privacy statement discloses the privacy practices for Hemophilia Federation of America (HFA) for those persons who utilize HFA鈥檚 website or any HFA publications and communications including, […]

News Categories: Industry News

January 20, 2016

Note: This story was originally published in the January 2016 issue of BioSupply Trends Quarterly. It can be read in its original format here. By Meredith Whitmore In this brave new world of medicines, more and more physicians are prescribing a biologic. Perhaps they have even witnessed a patient鈥檚 remarkable transformation thanks to biologics such […]

News Categories: Industry News

September 24, 2015

Novo Nordisk, along with the Coalition for Hemophilia B, Hemophilia Federation of America, and National Hemophilia Foundation have announced the B-HERO-S (Bridging Hemophilia Experiences Results and Opportunities into Solutions) study open to all patients with hemophilia B and the caregivers of children with hemophilia B. About the Study Building on the success of the original […]

News Categories: Inhibitors, HFA News, Medical News

December 3, 2014

On September 24, 2014, the medical journal,聽Blood, came out with a study called,聽Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using聽Kogenate/Helixate.聽 The聽World Hemophilia Federation聽(WHF) issued a聽statement on October 6,聽and another […]

October 31, 2014

This guide was put together by the聽Centers for Disease Control and Prevention (CDC), and is聽a great addition to our recent FitFactor post on聽watching how much sugar is in your food.聽We hope that you and your family stay safe this Halloween. Don鈥檛 let your health get tricked this Halloween! Here are a few ways to stay […]

News Categories: HFA News, Industry News

October 14, 2014

The recent outbreak of Ebola virus has caused great concern among many people. We read stories about isolation, experimental therapies and many deaths. It is understandable that this raises questions for persons who are more vulnerable to infections such as persons with immunedeficencies. We have seen questions and concerns expressed by various persons and would […]

April 20, 2014

(Positive Life): Bob Leahy:聽Barry. You鈥檙e off on another trip. Tell us about this one. Barry Haarde: This year鈥檚 ride is the shortest but fastest ride of the three and departs from L.A. on Easter Sunday and rolls all the way to Savannah, GA, which amounts to about 2,900 miles over a period of 27 days, […]

News Categories: Hemophilia History, HFA News

March 17, 2014

In the late 1980s, many in the hemophilia community felt they were not getting the answers they sought. The Committee of Ten Thousand (COTT) and the Hemophilia-HIV/Peer Association were formed to demand more information and transparency while holding accountable those who allowed the HIV/AIDS epidemic to spread so widely through the community. Below is a […]

News Categories: HFA News, Advocacy News

February 1, 2014

On January 31, 2014 Patient Services Incorporated, (PSI) sent the below letter to聽Secretary Sebelius to highlight the importance of patient assistance programs for families and to urge the department to refine its message about premium assistance taking into account the numerous assistance models. ____________________________________________ Dear Secretary Sebelius: I would like to first take this opportunity […]

October 9, 2013

By Kimberly Haugstad Benny had those dramatic finger print bruises that a lot of babies with severe hemophilia get. 聽Moms know the ones: thumb prints in front on each side in middle of ribs, fingerprints in back where you leverage his weight as you pick him up, bruises all over the body.聽 I remember agonizing […]

News Categories: Industry News

July 9, 2013

Wayne, NJ 聽鈥 Bayer HealthCare has announced the 2013 recipients of the Bayer Hemophilia Awards Program (BHAP). This year, the company awarded more than $2 million in funding to 16 recipients in nine countries, including six in the U.S. BHAP is the largest program of its kind in hemophilia, funding innovative research and educational initiatives […]

News Categories: Industry News

July 1, 2013

FDA Approves Baxter’s RIXUBIS as First Recombinant Factor IX Treatment for Routine Prophylaxis of Hemophilia B Approval brings patients first new rFIX treatment option in more than 15 years DEERFIELD, Ill.–(BUSINESS WIRE)– Baxter International Inc. (NYS: BAX) today announced that the United States Food and Drug Administration (FDA) has approved RIXUBIS [Coagulation Factor IX (Recombinant)] […]

March 15, 2012

From the American Pain Foundation: By Rebecca Rengo-Kocher, MA, MSW, LCSW, ACSW It’s easy to feel overwhelmed when you live with chronic pain. Every day life can be a struggle, seemingly impossible to overcome. You push yourself with every ounce of energy right down to your soul, and it feels like nothing’s there. Simple activities […]

News Categories: Industry News

October 14, 2011

FOR IMMEDIATE RELEASE Media Contacts: Deborah Spak, (847) 948-2349 Marie Kennedy, (805) 372-3543 Investor Contacts: Mary Kay Ladone, (847) 948-3371 Clare Trachtman, (847) 948-3085 BAXTER INITIATES PHASE III TRIAL OF INVESTIGATIONAL BAX 111 FOR THE TREATMENT OF VON WILLEBRAND DISEASE First Recombinant Product in Clinical Development for Most Common Inherited Bleeding Disorder DEERFIELD, Ill., OCTOBER […]

News Categories: Advocacy News

October 7, 2010

The Commonwealth Fund hosted a webinar聽on the Affordable Care Act provision on establishing temporary high-risk pools, also called Pre-Existing Condition Insurance Plans (PCIPs). PCIPs are designed to quickly make health insurance available to uninsured individuals with pre-existing conditions, many of whom previously had been denied coverage.聽PCIPs are a temporary measure until 2014 when the health […]

News Categories: Industry News, Community Voices

March 10, 2010

Disease Area Lead, Pfizer Hematology Trusted colleague, outstanding clinician and friend of the hemophilia community, Dr. Robert “Bob” Janco passed away on March 9 after a short but aggressive illness. Bob had a wealth of experience in the diagnosis and clinical management of adults and children with congenital bleeding disorders.聽He most recently served at Disease […]


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